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I am summarizing together the responses to two posts, one on dealing
with multiple food allergies in London, England, and the other on
meeting with a nutritionist in London. The nutritionist did not seem
surprised by our daughter's multiple symptoms that were unrelieved by a
strictly gluten free diet, and even was able to predict what those
symptoms were. He said he sees a lot of people with celiac disease who
have an ongoing variety of symptoms after eliminating gluten, and he
attributes this to their having problematic bacteria in their small
intestines. His approach is to first do a comprehensive test to find
out what is in the intestines, followed by a regime of herbs and a
special diet to kill off the bad bacteria and reinforcing the good
bacteria.
We have no idea if this approach will work for our daughter, but we are
giving it a try.
I heard from a total of 32 people on the two posts, and I have had long
correspondences with several of them. Most could strongly identify with
having what I call complicated celiac (or celiac with complications) -
where avoidance of gluten does not eliminate a variety of symptoms,
including food allergies, sinusitis, athlete's foot, nausea, headaches
of all sorts, joint pain, etc. Several also indicated that, like our
daughter, they had taken many courses of antibiotics, often at an early
age. A few were interested in who the nutritionist was - his name is
Ian Marber, and you can contact him and his staff through
www.thefooddoctor.com
Don't be put off by the website - it is oriented towards weight loss
which appears to be his bread and butter.
Several people have asked if there are doctors in the U.S. who use the
same approach. I do not know of any but will ask when we next speak to
Marber (he didn't know any off the top of his head). A couple of
people indicated they love their doctors - they didn't mention names,
but one lives in Atlanta and one in Santa Rosa. I can ask them for
names if anyone wants them. Also, in Rita's Smith's recent summary on
antibiotics, she refers to an email she received from Dr. Leonard
Weinstock, a gastroenterologist in St. Louis, MO. He is familiar with
bacterial problems associated with health conditions of people with
celiac disease and uses Xifaxan to treat them and said they could be
tested for with a Lactulose breath test.
The laboratory that we are working with to analyze the stool sample is
Genova Laboratories, in North Carolina. They have a website you can
find easily by doing a search. They refuse to tell you prices of
diagnositc tests unless you are a licensed health care provider (which
really irks me). However, if you call them and ask, they will tell you
doctors they work with in your area - perhaps that would be another way
to find someone who might be able to work with you if you want to try
this approach.
I think that folks with complicated celiacs (like our daughter) have a
problem knowing how to get better, or even where to start. In our
case, we tried working with one gastroenterologist, whose only response
was that he wanted to do another endoscopy, and another who didn't want
to do any diagnostic tests and thought she should get pain management
counseling. We tried working with a pediatric group, who freely
prescribed antibiotics and referred us to specialists for all her
different symptoms. Those specialists couldn't identify what was wrong
and would either insinuate that she was faking her problems to get
attention or give her a diagnosis that was more of a life sentence than
the beginning of an approach to healing. We tried the "alternative
medicine" route, and she took all sorts of supplements, (up to 15 a
day) some of which helped for a while but ultimately she felt worse.
One "alternative doctor" sold us a supplement that we later found out
contained gluten. Using naturopathic doctors, we found out that our
daughter has IgG allergies to milk and dairy, but even cutting out
those foods completely (egg) or mostly (dairy -- just couldn't
completely give up M&Ms), her problems continued. She tried enzymes to
help her to digest her food (no apparent affect), homeopathic remedies
(occasionally helpful for reflux, nausea, motion sickness, acute gluten
reactions), acupuncture (good for muscle pain but not other symptoms),
osteopathic manipulation (seemed to have a positive effect but none
lasting), and a chiropractor (helpful in dealing with structural
issues).
The charm of Marber's approach (which is not his approach alone, but he
is the first health practitioner to suggest it to us) is that it is
simple and it focuses on a part of our daughter's body that we know
has been damaged by celiac disease and believe has been affected by
multiple courses of antibiotics -- her small intestine. It makes a lot
of sense to me to start addressing her problems where they started, not
in the many locations where symptoms appear. I also like that it
starts with an comprehensive diagnostic but noninvasive test that will
provide a picture of what is living in our daughter's small intestine,
rather than looking for only one or two possible culprits. (Note -
initially, Marber wanted an analysis of all the bacteria, but he now is
recommending a more comprehensive test that also looks for all
parasites so he has a more complete picture.)
Even though this approach is appealing intellectually, we have no idea
whether it will help. Our daughter has received the test kit and will
begin the stool sampling in the next few days. I believe we should get
results a couple of weeks later. Then we will know exactly what is
going on in her intestines and what herbs and diet that Marber thinks
will help. I will keep the list informed of what we learn and any
changes in her health., If anyone else has gone through or finds
doctors who follow a similar program, let me know and we can share our
experiences.
Jackie in AZ
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